“We were just so grateful to have caught it,” said her mom, Serena LaGesse.

Bethany was born years before pulse oximetry screening became routine in most hospitals across the country. With no sure way to detect it, Bethany’s heart ailments were a tragedy waiting to happen.

Tetralogy of Fallot changes the flow of blood through the heart. It occurs in about one of 2,500 births in the United States each year, but Bethany had the rarest form of the condition and doctors weren’t sure how best to treat it.

Surgery kept her alive, but it was still touch and go for months, as it is for thousands of babies born each year with critical congenital heart defects.

“I had surgery about every six months,” said Bethany, now 19. “It was pretty much just a part of my life. I couldn’t do what other kids do because I’d get so tired.”

Bethany Gooch as a child, after one of her 32 surgeries over the years. (Photo courtesy of Bethany Gooch)

Doctors at the time didn’t know how to treat such a complicated condition, in part because the research and experience weren’t there.

“In that regard, she truly is an example of how you keep someone alive until new research shows a new technique or a new treatment,” Serena said.

And so a couple times a year, the infant, then toddler, then preschooler would go into the hospital for surgery to help keep her heart pumping.

When Bethany got to first grade, she realized that what for her had become normal life was in fact very different from other kids’ lives.

“I’d sit down and watch the other kids run,” she said. “Whenever there was recess, I had to take naps.”

When she was 8, a new surgical procedure allowed doctors to close a hole in her heart.

“My skin turned from bluish to pink, and I could breathe so much better,” Bethany said.

Another turning point came when she could go to a camp for kids with heart disease in Eva, Tennessee. It made Bethany feel like she wasn’t alone.

“I made really good friends,” said Bethany. One new friend was a girl named Sarah Theobald, who had the same conditions as Bethany. Tragedy struck, however, and Sarah passed away. It made Bethany even more determined to fight.

It was a phrase Sarah used a lot as they dealt with the deaths of friends over the years, said Bethany. “To help me deal with the grief, she’d say they were chasing purple butterflies.”

Bethany said the memory of her friend helped see her through several more surgeries, including a heart valve replacement in 2015.

Congenital Heart Defect Awareness Week began Tuesday, and as with many other survivors, each new development has led to a new surgery that improves Bethany’s life. She has found reason to believe she can live a normal life and now plans to become a nurse.

“I always wanted to [be a nurse], but I just didn’t think I could,” she said, referring to physical stamina. “Now I know I can.”